Chemotherapy options/help

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wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Chemotherapy options/help

Postby wife2jeff » Sat Nov 23, 2019 11:47 am

Husband had surgery for stage 3 colon cancer (LAR) . He started chemo in Sept which was suppose to be the FOLFOX but due to a neuropathy issue he has had in the past came on right after his surgery again therefore when he started they only were doing the 5fu and leucavorin (sp?) until he had his neuropathy under control. So after getting it under control we talked with the oncologist about adding the Oxy which we are very afraid of due to the neuropathy that it causes so we decided to do 1/2 dose. So Tuesday he had his 6th treatment (half way done) with the 1/2 dose of oxy added. He had no neuropathy however he has been so sick since, the nausea has been horrible along with feeling flu like all day, he has slept literally the last 4 days and feels awful. I know chemo isn't fun but he said that there is no way he can do the oxy anymore. I know it's not my decision, has anyone on here ever stop oxy and do just 5fu for stage 3? He is just not tolerating it well, they have him on 3 different nausea meds plus they gave him 3 as premeds. Any help advise your experience would be great. thansks

sadysue
Posts: 985
Joined: Tue Aug 02, 2011 6:59 pm
Location: Charleston, TN

Re: Chemotherapy options/help

Postby sadysue » Sat Nov 23, 2019 12:54 pm

That would be me :-) Stopped oxy half way through chemo and glad I did because I still have crazy issues with neuropathy. My diagnosis was back in 2011 and I am still here and doing well. I believe that 5FU is the real "fighter" in the battle of colon or rectal cancers. Good luck!
Rectal dx 4/2011 (Stage 3B - T3N1M0)
5FU/Rad - daily/6 wks ending 6/2011
Surgery 8/19/2011
Finished 8 rounds Folfox 2/2012
Ileo reverse and port out 3/2012
NED

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Chemotherapy options/help

Postby wife2jeff » Sat Nov 23, 2019 1:38 pm

Thank you, that is one thing we are very afraid of is the neuropathy. He said he just can't do anymore oxy from the side effects, I can't even believe with only 1 at 1/2 dose can be so different. He's weighing the slight percentage I think his oncologist said 3-5% (I could be wrong) survival with oxy added that isn't much considering the side effects.

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ginabeewell
Posts: 371
Joined: Wed Oct 24, 2018 10:30 am

Re: Chemotherapy options/help

Postby ginabeewell » Sat Nov 23, 2019 1:59 pm

Dr Kemeny at MSK took me off Oxy after my 8th round. I think I’ve had 19 or 20 rounds total so more than half without Oxy.

Seems like that was enough for me, along with Vectibix. The pathology of my last resection suggested that the cancer was 99% dead.

I’ve elsewhere read that the new standard for Oxy is no more than 6 rounds. After that, risk of neuropathy increases dramatically and effectiveness starts to plateau.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Chemotherapy options/help

Postby wife2jeff » Sat Nov 23, 2019 3:25 pm

Thank you but he has only had 1 dose of oxy and it was 1/2 a dose, he doesn't think he can do more. He is so torn.

NHMike
Posts: 2338
Joined: Fri Jul 21, 2017 3:43 am

Re: Chemotherapy options/help

Postby NHMike » Sun Nov 24, 2019 8:24 am

My Oxy was tapered but I don't remember the exact schedule. I am about 18 months out from finishing chemo.

I have had moderate neuropathy issues in my toes. They tingle in the cold. Sometimes they get painful, particularly on hard floors. Things have improved, though, after 18 months. It's no longer painful - the tingling is still there from time to time but it doesn't hurt anymore.

Some people report neuropathy improving after six months or a year or longer. My understanding is that it's an issue with circulation and, perhaps all of the blood that they take during surveillance dilutes the stuff.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Chemotherapy options/help

Postby wife2jeff » Sun Nov 24, 2019 3:59 pm

Thank you, glad to hear your neuropathy wasn't too bad. Oddly last night he woke me up and said that he had tingling in his feet, scared the crap out us especially because it is 6th day out from chemo, thankfully it subsided. I think he has made the decision to continue the 5fu but not the oxy. I hope it's the right choice but I can't make it for him. Others have told us that the 5fu is the golden and the oxy is only a "boost" that doesn't give much of an increase in percentage of survival, if I am correct I think it was like 5% or less, therefore he doesn't feel that getting neuropathy where he wouldn't be able to work would not be worth it for such a small percentage but again I'm torn. I appreciate everyone's insight and their plan of treatment.

boxhill
Posts: 405
Joined: Fri Apr 06, 2018 11:40 am

Re: Chemotherapy options/help

Postby boxhill » Sun Nov 24, 2019 9:09 pm

If you would create a signature with your husband's medical details in it it would help people respond to you.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/4/18 FOLFOX
Neulasta 6/28
7/9/18 CT NED
11/20/18 CT NED. Enlarged spleen.
12/20/18 Liver MRI 5mm liver met? and 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/5/19 Triphasic CT LN and spleen normal, Liver node stable
6/28/19 Pause Keytruda, predisone for joint pain
7/31/19 Restart Keytruda
9/10/19 CT stable

rachelfromnyc
Posts: 22
Joined: Fri Oct 04, 2019 11:32 am

Re: Chemotherapy options/help

Postby rachelfromnyc » Sun Nov 24, 2019 10:17 pm

I have heard of people having 5FU by itself, without any of the add ons. But I don't know the reasoning as to why it was done that way. I can tell you my experience though- I did 6 total rounds of FOLFOX. Three were at the max dose and the remaining three were at 85% of the maximum dose. They took it down because my white blood cell counts were low. At the time, we were trying to get my counts to come back up naturally while I worked with the insurance company to cover neulasta. I didn't have neuropathy but who knows what I'll experience in terms of long term side effects.
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

Rock_Robster
Posts: 399
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Chemotherapy options/help

Postby Rock_Robster » Mon Nov 25, 2019 12:47 am

You guys might find this of interest?

https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30093-7/fulltext

Several jurisdictions are moving to 3 months for adjuvant FOLFOX, I believe. My oncologist was quite happy for me to finish up FOLFOX around round 8-9; said it was up to me if I just wanted to finish out the 12 cycles with 5FU only (but said there’s no evidence for it so would be purely for my anxiety...)

Cheers
Rob

PS: sorry for some reason the closed bracket breaks that link; may have to copy & paste it.

Moderator note:
using the [url][/url] tags to enclose the link will preserve the whole link as noted below and edited above !

Code: Select all

[url]https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(18)30093-7/fulltext[/url]
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & (01/20) stoma reversal

Deb m
Posts: 521
Joined: Tue Jan 14, 2014 10:08 am

Re: Chemotherapy options/help

Postby Deb m » Mon Nov 25, 2019 2:37 pm

The real benefits of treatment are from the 5Fu. The Oxi only adds a small benefit. Yes it's true that any little benefit we can gain in fighting this disease were all for, but you have to way the risks and side effects which could be permanent with the added benefit you may receive. My husband made it thru 9 treatments with full Folfox. The last three were without the Oxi. I was very troubled by this because I wanted to continue throwing everything possible at this cancer, but our oncologist made the correct decision. My husband was at the point where he couldn't button his own shirts and it was getting painful to walk because of the side effects. I believe if we would of continued on with the last three treatments containing Oxi, he would of ended up with permanent neuropathy. It took about a year after all treatments finished, but 90% of his side effects slowly disappeared. He is left with just very minimal numbness and tingling on the bottom of his feet that really doesn't bother or interfere with his normal activity.

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CRguy
Posts: 10038
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Re: Chemotherapy options/help

Postby CRguy » Tue Nov 26, 2019 1:09 am

wife2jeff wrote: ..... has anyone on here ever stop oxy and do just 5fu for stage 3? He is just not tolerating it well, they have him on 3 different nausea meds plus they gave him 3 as premeds. Any help advise your experience would be great. thanks
Baaaaack in the day ..... infused 5FU/leucovorin was the major option, then oxaliplatin was added/recommended for a 3-5% benefit.

Originally thought to be a Stage 3C, I chose Xeloda (basically oral 5FU with benefits ) for neoadjuvant chemoradiation and adjuvant chemo post resection. The Onc actually seemed to be not very enthusiastic about adding Oxy so I didn't.

About 3 years later with the lung met discovery I went "all in" with the FOLFOX regime and did 12 cycles with a dose reduction of Oxy around cycle 8. Tomorrow actually, I am going in for a recheck EMG to follow up on neuropathy issues ( mild ) which my Docs want to keep an eye on.

Most folks don't want to do 12 FULL Oxy cycles.
Most do not tolerate it well.
LESS cycles are being validated as not inferior to MORE cycles.
IF it is kicking his ass ... YES I would seriously talk to docs about dropping it if dose reductions are not making things better.

I never had major nausea issues, so I toughed it out.
I am 9 years out from my last dose of evil Oxy / Satan in a Bag :twisted:

Did it help me to be here now ? Did I get a met because I didn't have it at resection ?
Truth is I don't really know.

IF I had the issues your hubby is having ... Yes I would have dumped it,
looked for alternatives and engage in VERY aggressive follow up monitoring ( which I did anyway !!!)

...AND Yes, my friend ... No it is not your decision
Support him, give him all the info we have here.

My B-I-L had a similar rectal tumor to mine, same surgeon, same oncologist.
ONLY had 5FU at the time ( 5 years prior to me and 6 years younger at the time )

He had no recurrences / I had ONE !

You tell me which is the best scenario ????

Every patient is different, and so is every outcome,
so if the treatment is worse than the disease ..... ?
We can only DO what we can do.
Quality over quantity is what I would chose
IMHO

Cheers and best wishes to you and hubby.
on the Journey with y'all
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Chemotherapy options/help

Postby wife2jeff » Wed Nov 27, 2019 10:22 am

Thank you CRguy your post was very helpful! I have been doing a lot of research on the added boost and percentage it has. Like Deb said, I just want to throw everything at this cancer, but I also don't want him to have these horrible side effect nor the permanent neuropathy, that would prevent him from everything he loves, his work and all hobbies. He is 9 days out today and he is still feeling like crap. He has had so much stomach issues on top of it this time which has been quite a bit worse than previous treatments so we are assuming it's the oxy, chest discomfort and yes the constant nausea that the pills don't seem to do much.
It's really nice to hear your story and story of your bil the different treatments with different outcomes and now NED that is encouraging. Thanks for sharing.

PS just curious is your signature name CRguy because you ride dirtbikes?

Thanks again

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CRguy
Posts: 10038
Joined: Sun Feb 10, 2008 6:00 pm

Re: Chemotherapy options/help

Postby CRguy » Wed Nov 27, 2019 1:55 pm

sorry, no Honda connection here :shock:
actually stands for ColoRectal guy

originally was to be CRCguy = ColoRectal Cancer guy
BUTT ... I decided metaphorically and actually !!!!!
to get rid of the cancer part of the name :twisted:
before I registered here

Cheers and Harmony
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
12 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

wife2jeff
Posts: 63
Joined: Thu Sep 12, 2019 11:21 pm

Re: Chemotherapy options/help

Postby wife2jeff » Wed Nov 27, 2019 5:58 pm

Oh haha I see that now. My husband is an avid dirt bike rider so he had a crf450 for years so that was my first thought, didn't even think anything else.


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